INSIDE THIS ISSUE
Health Educa#on Yorkshire & Humber Public Health Specialty Registrars
April 2015
PH1….Far From Neutral FOCUS ON LONELINESS AND SOCIAL ISOLATION Welcome to the April 2015 edi on of PH1 which is themed around the issue of loneliness and social isola on. This issue has been put together by public health trainees in Yorkshire & Humber. As a region we have chosen to adopt the theme of loneliness and social isola on for 2015, and as such we have commi&ed to raise the profile of this important public health issue both locally and na onally. PH1 provides a great opportunity to highlight the impact of loneliness on health and wellbeing to a public health audience. Social isola on as measured by the Adult Social Care Survey and Carers Survey is one of the indicators of the Public Health Outcomes Framework (1.18). Na onally, Public Health England has worked with The Campaign to End Loneliness and a number of other partner organisa ons to iden fy and share best prac ce examples of strategies to tackle the issue. In true public health style we have set the context by taking a look at the issue in more detail, how it is defined, who is at risk, what the evidence tells us and how we can measure the impact of loneliness. Read registrar Nick Leigh-Hunt’s informa ve ar cle on page 2. One way we, as a region, are raising the profile of the impact of loneliness is through our formal partnership with the na onal Campaign to End Loneliness. You can read an interview with the Director of the Campaign, Laura Alcock-Ferguson, on page 6. In it she talks about the role public health can play in ensuring that loneliness is recognised as a public health priority by Health and Wellbeing Boards across the country. Chronic loneliness affects 800,000 older people in the UK, but its effects are not only confined to the over 65s. In our Frontline Perspec ves ar cle on page 9 we have interviewed staff working on the frontline about how they iden fy loneliness and how they think it should be tackled. The ar cle highlights the diverse range of people who can be impacted.
Loneliness & Social Isola#on — Facts and Figures ............ 2
Tackling social isola#on in Yorkshire & the Humber ...... 5
Interview with Laura AlcockFerguson, Campaign to End Loneliness ........................... 6
Frontline Perspec#ves on Loneliness ........................... 9
Social Isola#on and Chronic Illness ……………………………...12
Tackling Loneliness: A case study ……………………………….14
Loneliness & Isola#on: An Academic Perspec#ve ……..15
Chronic Illness and Social Isola#on: Beyond Theory …….16
The Silver Line …………………18
Final Thoughts ……….……….20 As the profile of this issue grows, a number of local authori es and CCGs are considering ways in which they can tackle loneliness. The Big Lo&ery Fund has awarded funding to 15 areas in England and Wales to tackle loneliness and social isola on in older people. In Yorkshire, Sheffield and Leeds were successful in their lo&ery bids and you can read more about their plans on page 5. Dr Sophie Egerton gives a powerful insight on into the rela onship between social isola on and long-term condi ons both from an academic and personal perspec ve. Read her ar cle, star ng on page 12. Many of you will have heard of Silverline, the helpline launched by Esther Rantzhen to provide support to older people experiencing loneliness and social isola on. The current director talks to one of our Registrars, Ma&hew Neilson on page 18 We hope you find this edi on of PH1 helpful and informa ve.
“Loneliness and the feeling of being unwanted is the most terrible poverty” (Mother Teresa) 1
LONELINESS & SOCIAL ISOLATION - FACTS AND FIGURES By Nick Leigh-Hunt. Public Health Registrar
What is social isola on? It is important to dis nguish between social isola on and its sister concept loneliness. Loneliness is defined as the subjec ve feeling of the absence of a social network (social loneliness) or a companion (emo onal loneliness); social isola on is defined as an objec ve lack
of interac ons with others or the wider community. Some defini ons of social isola on bring the two concepts together by considering both the quality and the quan ty of social interac ons, with loneliness viewed as part of the former. However while the two may be closely associated, it is possible to be lonely but not socially isolated and vice versa, or experience
“Lonely individuals have been es mated to have a greater risk of developing clinical demen a, depression , Alzheimer’s and undergoing cogni ve decline” What are the Risk Factors? Popula on subgroups There are rela vely few studies on the importance of ethnicity in social isolaon; there may be li&le difference between different ethnic groups in mid life, but in later life these become pronounced with older Chinese individuals being three mes lonelier than older Indian individuals. Geography is also an issue, as social exclusion in the elderly is two and a half mes greater in densely populated areas compared to those less dense. However the older rural popula on in the UK is set to increase in coming decades, which will present challenges in terms of elderly individuals being able to access social and support groups, given the poorer transport links.
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Social isola on can occur throughout life, but is much more common in the elderly, due to reduced mobility and the loss of family or friends through bereavement. It has been reported that more than half of nursing home residents may feel lonely. Women make up a greater propor on of lonely individuals since the ra o of women to men increases with age. Apart from age and gender, other risk factors include: physical and mental health; socio-demographic factors, such as household composi on, being a carer, or poverty; and the social environment, such as the place of residence, driving status, access to transport, or the built environment. In children and young adults loneliness and social isola on are related more to bullying, lack of outdoor areas to play, and paren ng styles.
Data & Trends It is difficult to ascertain accurate figures as many individuals do not admit to being lonely. However the most recent survey by the Office of Na onal Sta s cs iden fied that 17% of all individuals over 80 years were oHen lonely and a further 29% were lonely some of the me; this is significantly different to the figures of 9% and 25% respec vely for individuals aged over 52. The propor on of older people repor ng that they are lonely has remained rela vely constant over me in the UK; three separate studies from 1948, 1954 and 2005 showed that a li&le under 10% reported feeling lonely all the me, but the propor on of older individuals who reported feeling lonely some of the me increased from 13% in 1948 to 25% in 1954 to 32% in 2005. However compared to other European countries, the UK is a less lonely place for older people. Loneliness is not confined to older adults; a survey by the Mental Health Founda on found that 12% of 18-24 year olds were oHen lonely with 45% lonely some of the me. A survey of pre-teens iden fied that 41% had experienced loneliness.
Causes of Loneliness in four neighbourhoods in Yorkshire. Source: Joseph Rowntree Foundation
Importance for the individual Whether loneliness is a cause or effect of ill health is difficult to ascertain as most research on the subject involves cross sec onal studies. Much of the research considers the rela onship with mental health since there is a strong associa on between loneliness and general sa sfac on with life. Lonely individuals have been es mated to have a greater risk of developing clinical demen a, depression , Alzheimer’s and undergoing cogni ve decline. Associa ons with aspects of physical health include adverse affects on blood pressure and a greater all cause mortality for those suffering from loneliness or social isola on. A meta- analysis of 148 longitudinal studies including around 300,000 individuals followed up for the greater part of a decade on average showed that those with good social links had a 50% greater likelihood of survival, which is akin to the effect of smoking up to 15 cigare&es a day for those more socially isolated. There are several theories as to how a lack of social support leads to physical disease, in par cular those considering the development of cardiovascular disease. It has been hypothesised as being mediated through adverse effects of the nervous system and adrenaline on heart rate, blood pressure and the repair of blood vessel walls or through the lack of protec ve hormones such as oxytocin which are released on close physical contact with others. Health behaviours are equally implicated in the associa on between lack of social support and cardiovascular disease, as strong rela onships are linked to healthy behaviours while those who are socially isolated may take up harmful behaviours.
Importance for Society Social isola on has an impact on service u lisa on as affected individuals are more likely to undergo early admission into residen al or nursing care. It may also contribute to a large part of primary care workload, with 1 in 10 individuals visi ng their GP poten ally doing so because of loneliness. Among the elderly, it has been associated with increased emergency hospital admissions and hospital re-admissions.
Na onal context Social isola on as measured by the Adult Social Care Survey and Carers Survey is one of the indicators in the Public Health Outcomes Framework (1.18). Public Health England has worked with The Campaign to End Loneliness and a number of other partner organisa ons to iden fy and share best prac ce examples of strategies to tackle the issue. The Big Lo&ery Fund is currently suppor ng approaches to reduce social isola on in 15 areas across England and Wales.
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Measuring & Evalua#ng It is difficult to quan fy loneliness and social isola on, partly because there are no universally accepted defini ons of the concepts, but also because different aspects of them are used to generate metrics. Both vary across the life course and can be temporary or of long dura on which will have differing effects depending on the age of subjects being studied. There are also cultural and gender differences with respect to how prepared individuals are to admit to being lonely or discussing it. A range of tools have been developed some of which are based on self report ques onnaires on subjec ve feelings while others are based on the degree of social contact or networks. Examples of some of the tools are:
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The University of California, Los Angeles Loneliness Scale, a 20 item self report ques onnaire which aims to measure selfperceived isola on, and rela onal and social connectedness.
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The De Jong Gierveld Loneliness Scale, an 11 item self report ques onnaire which aims to measure overall emo onal and social loneliness, including the sense of emp ness, missing having people around, feeling rejected and the presence or absence of people to rely on, trust or feel close to. A shorter version has been developed for use in surveys.
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The Lubben Social Network Scale, a 10 item ques onnaire developed to assess the level of social support available to an elderly pa ent in order to iden fy those in need of assistance. It contains ques ons on family and friends, close rela onships, living arrangements and the degree of caring ac vity.
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The Medical Outcomes Study Social Support Survey, a 19 item self report ques onnaire ini ally developed to assess individuals with chronic medical condi ons. It covers areas such as emo onal, tangible and affec onate support and posi ve social interac on.
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The Mul dimensional Scale of Perceived Social Support, a 12 item self report ques onnaire which measures percep ons of support from family friends and a significant other, and has been adapted for use in other languages.
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The Friendship Scale, a 6 item self report ques onnaire which assesses the ability to share feelings or be in mate with a significant other, relate to others in a meaningful way, ask others for help when needed, and iden fies the presence of social networks or feelings of being isolated from others in social seLngs or loneliness.
References 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19.
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Drageset, J., Kirkevold, M. and Espehaug, B. (2011). Loneliness and social support among nursing home residents without cogni ve impairment: a ques onnaire survey. Interna onal Journal of Nursing Studies, 48, p611–9. Office of Na onal Sta s cs (2013). Measuring na onal well being, older people and loneliness, p4. Victor, C., Burholt, V. and Mar n, V. (2012). Loneliness and ethnic minority elders in the UK: an exploratory study. Journal of CrossCultural Gerontology, 27, p65-78. Age UK (2009). Social exclusion in later life, an explora on of risk factors, p13. Victor, C. (2005). The Social Context of Ageing: A Textbook of Gerontology. European Social Survey (2006-12). European social survey loneliness figures. h&p://www.europeansocialsurvey.org/ Griffin, J. (2010). The Lonely Society. Mental Health Founda on h&p://www.mentalhealth.org.uk/content/assets/pdf/publica ons/the_lonely_society_report.pdf Ac on for Children (2009). Stuck in the middle: the importance of suppor ng six to 13 year olds. www.ac onforchildren.org.uk Fra glioni, L. et al (2000). Influence of social network on occurrence of demen a: a community-based longitudinal study. Lancet, 355, p1315–9. Cacioppo, J.T. et al (2006). Loneliness as a specific risk factor for depressive symptoms: cross-sec onal and longitudinal analyses. Psychology and Aging, 21 (1), p140-51. Wilson, R.S. et al (2007). Loneliness and risk of Alzheimer disease. Archives of General Psychiatry, 64 (2), p234-240. James, B.D. et al (2011). Late-life social ac vity and cogni ve decline in old age. Journal of The Interna onal Neuropsychological Society, 17 (6), p998-1005. Hawkley, L.C. et al (2010). Loneliness predicts increased blood pressure: 5-year cross-lagged analyses in middle-aged and older adults. Psychology and Aging 25 (1), p132-41. Holt-Lunstad, J. et al (2010). Social Rela onships and Mortality Risk: A Meta-analy c Review. PLOS Medicine, 7 (7): e1000316. Russell, D.W. et al (1997). Loneliness and nursing home admission among rural older adults. Psychology and Aging, 12 (4), p574-89. Ellaway, A. et al (1999). Someone to talk to? The role of loneliness as a factor in the frequency of GP consulta ons. Bri sh Journal of General Prac ce, 49, p363–7. Molloy, G.J. et al (2010). Loneliness and emergency and planned hospitaliza ons in a community sample of older adults. Journal of the American Geriatrics Society, 58, p1538–41. Public Health Approaches to Social Isola on and Loneliness h&p://www.campaigntoendloneliness.org/phe-approaches-loneliness/
TACKLING SOCIAL ISOLATION IN YORKSHIRE AND THE HUMBER By Ma>hew Neilson. ST3 in Public Health Increasingly, social isola on and loneliness is being recognised as a priority by policy makers and funding bodies, and important work is being done in a range of seLngs to start to tackle this problem. We asked organisa ons around the region what they were doing, and heard about some really interes ng and innova ve projects.
Social Prescribing in Doncaster
Staying Well in Calderdale
GPs are in a key posi on to iden fy and support socially isolated people. In Doncaster a recent ini a ve, jointly funded by Doncaster Council and NHS Doncaster CCG, aims to enable this.
The ageing popula on is a public health priority, and loneliness and isola on affects use of health and social care.
North Yorkshire County Council
Ageing Be>er in Sheffield
This is a predominantly rural popula on, presen ng a par cular challenge in tackling social isola on. The County Council and partners have iden fied social isolaon as a priority issue, and it features in their Joint Strategic Needs Assessment.
Sheffield was awarded Big Lo&ery funding aimed at reducing social isola on among older people. The consor um running the Ageing Be&er project is led by South Yorkshire Housing Associa on.
Time to Shine in Leeds
Leeds City Council and third sector organisa ons, led by Leeds Older People’s Forum, were awarded Big Lo&ery funding to reduce social isola on and loneliThe Staying Well project aims to: reduce ness in people aged 50+ in Leeds. The loneliness and social isola on; create Time to Shine project is a six year proGPs are taking part in a pilot scheme to more connected communi es; improve gramme which aims to reach over iden fy pa ents and refer them on to a coordina on between sectors and or15,000 people. ganisa ons. community organisa on that will signProjects will include: social prescribing; post to the appropriate local services. Community hubs micro-commission new digital inclusion IT; building senior netPar cipa ng GPs have been given a schemes. The Local Authority has emdedicated “social prescrip on pad.” works ; provision of social and cultural ployed staff to support hubs and coordiac vi es. nate individuals and neighbourhood A team, run by a partnership of South Time to Shine will also work to raise Yorkshire Housing Associa on and Don- workers. Five GP prac ces are pilo ng awareness of social isola on through social prescribing. Calderdale CCG fund caster CVS assess the pa ent in their outreach work with the public, and the project which is being evaluated by own home, and refer them to the approhealth and social care professionals. the University of Lincoln. priate provider organisa ons.
The council’s Innova on Fund provides small grants to community and third sector organisa ons and a key aim of the fund is “reducing loneliness”. Funded projects include the Community Café “on tour”, where a community informa on service is taken to rural areas. Other projects t arget young people with disabili es, and the homeless.
The role of public health
Social isola on represents a challenge for health and social care. In addi on to its role in emo onal wellbeing, it has a direct effect on wider aspects of health and can increase service use. There is a clear role for public health - to iden fy Planned projects include: development those at risk and effec vely target reof a “neighbourhood toolkit” to iden fy sources. There is also a clear role for the and support isolated people; suppor ng public health in local authori es, Public innova ve ideas to tackle isola on; popHealth England, and other seLngs in up events to raise awareness; an interdeveloping an evidence base. genera onal skills swap, where young people are paired with isolated older Many of the projects men oned here have had valuable input from public people; peer mentoring to help older health, but there is clearly more that can people cope; counselling services; and be done to reduce the impact and burtraining “access ambassadors” to help den of loneliness and isola on across older people tackle their isola on. the region and the country.
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CAMPAIGN TO END LONELINESS Campaign Director Laura Alcock-Ferguson talks to Eleanor Houlston, ST3 in Public Health Laura Alcock-Ferguson is Director and founder of the Campaign to End Loneliness, a national partnership which aims to raise awareness of loneliness and its impact on the health and wellbeing of older people in the UK. Since its launch in 2011 the campaign has grown rapidly, and now has over 2000 supporters. Here Laura talks to PH1 about the long-term aims of the campaign and the role public health can play in tackling this important and growing issue. What is the ul#mate aim of the Campaign to End Loneliness? The Campaign inspires thousands of people and organisa ons to tackle loneliness and create the right condi ons so that people in later life have the number and quality of contacts that they want. How did the Campaign to End Loneliness get started?
years since we were founded focusing on both campaigning for loneliness to be priori sed as a health issue and by Loneliness is a complex and personal spreading the learning on what really ma&er affec ng 3 million older people works when it comes to tackling the today and with life expectancy on the blight that loneliness and isola on increase, and divorce rates increasing, in brings to the lives of older people. the future this figure is expected to rise. Whilst there is much academic research that could help improve front-line services, historically there was a lack of transla on of this research into prac ce. There was also li&le coordinated ac on to share evidence and good prac ce in tackling the loneliness felt by older people among frontline organisa ons. It was this opportunity to create be&er understanding and coordinate ac on to tackle loneliness in older age that led our partner organisa ons to launch the “Campaign to End Loneliness” in 2011.
Have you been involved from the start, or did you join when the campaign was established?
This number may be further increased by changing demographics - for example, more people aged 45 -65 are divorcing or living alone and these are major risk factors in becoming isolated and lonely in later life. Living alone is not the only risk leading to loneliness: research shows that socially excluded groups – including LGBT communi es, minority ethnic groups and people with physical or learning disabili es – are also more likely to feel lonely in older age. Loneliness and isola on have been shown to Loneliness and social isola#on can be as harmful to health as smoking 15 affect a wide range of people. Can you cigare&es a day and loneliness is linked describe the main groups that you work to a wide range of mental and physical with/campaign on behalf of, and the health problems. issues they face? I have taken the idea of the Campaign from a piece of paper to where we are today: since launching in 2011 the Campaign has grown to over 2000 supporters, with research and prac ce contacts across Europe and worldwide. We have moved the debate about loneliness from one where social contact was seen purely as a “nice-to-have” community bonus to an issue that needs urgent ac on due to its impact on health.
The Campaign is led by five organisaons, Age UK Oxfordshire; Independent Age; Sense; Manchester City Council; and Royal Voluntary Service (previously WRVS). Together with our 2000+ supporters, and many new organisa ons and ini a ves that have started since Loneliness can be caused by a wide 2011 to tackle loneliness, we have all achieved a huge step forward in the four range of circumstances - for example,
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bereavement, re rement, moving home or the onset of ill-health. These things are more likely to overlap in older age, leaving those in later life more at risk of loneliness. In the UK, almost 4 million (37%) of those over 65 say they are lonely “some mes” or “always” and, with a growing older popula on, there is a risk that this number could grow to almost 6 million by 2030.
WHAT DOES THE CAMPAIGN DO? The Campaign to End Loneliness inspires thousands of people and organisa ons to do more to tackle loneliness in older age. We work through community ac on, sharing good prac ce and evidence to ensure loneliness is acted upon as a health priority. The improvement of direct service provision for older people is at the very core of what we do – and we work with hundreds of front line chari es as well as local authori es to help them create the right condi ons in their local area for older people to avoid loneliness. Our main ac vi es currently include: Learning Network: We share learning about how to best reduce loneliness both with our 2000+ supporters and beyond, through our events, media coverage, case studies, research bulle ns, publica ons, webinars, online Learning Network and online forum, regular updates, Twi&er and other social media. Convincing commissioners to invest in ac on to reduce loneliness.
Our publica on Promising Approaches to Reducing Loneliness and Isola on offers a route to help commissioners recognise the complex and individual experience of loneliness and to ensure they do not seek a ‘one size fits all solu on’. In par cular, the new framework in the report (see above) features four dis nct categories of loneliness interven on that could be put in place to provide a comprehensive local system of services to prevent and alleviate loneliness.
“We have moved the debate about loneliness from one where social contact was seen purely as a “nice-to-have” community bonus to an issue that needs urgent ac on due to its impact on health. “
Ensuring the voice of older people is being heard. Service Improvement: We are currently working on two key areas to help front line organisaons improve: 1. Developing a measurement tool to measure effec veness of interven ons to reduce loneliness. 2. Suppor ng the iden fica on of those most at risk of loneliness
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How are you measuring the effec#veness of the Campaign to In the mean me, our latest evalua on report shows that we are on track to deliver our long term impact. Some of these End Loneliness? outcomes can be seen in our three year evalua on report: We have a robust evalua on based on the change we seek to h&p://www.campaigntoendloneliness.org/wp-content/ create - our outcomes - by an external evaluator – the Chariuploads/downloads/2013/12/CES-impact-evalua on-of-thees Evalua on Service. Our evalua on results show the Campaign-to-End-Loneliness.pdf changes we have created within organisa ons: both organisaons that fund others (local authori es) and organisa ons that help older people directly. This evalua on is s ll ongoing and will also track the longer-term results of these service and funding changes for older people themselves, with results expected from 2016 onwards.
“We want to inspire change in both those in posi ons of power and influence and in those working directly with anyone in later life. By 2020 our aim is for at least 75% of health and wellbeing boards to have priori sed loneliness or isola on.”
As Director, what changes would you like to see implemented to address loneliness and social isola#on by the year 2020?
case studies to support local authori es in finding ways to tackle loneliness. In fact, in June the Campaign will be launching an online tool providing guidance for commissioners to take ac on in their communi es. We also have the voice of We want to inspire change in both those in posi ons of power over 700 front line services behind us, all of whom are workand influence and in those working directly with anyone in ing hard to try to support people at risk of loneliness. later life. By 2020 our aim is for at least 75% of health and However taking our messages to every local authority and wellbeing boards to have priori sed loneliness or isola on. geLng these messages heard is not always easy. Working We would also like hundreds of organisa ons to be reaching out to those most at risk of loneliness, by using be&er iden fi- with Public Health Speciality Registrars who understand the key issues and are able to communicate them to key decision ca on tools, and hundreds more organisa ons to be able to makers in local authori es, ensures that our message is heard prove their effec veness by using our new Loneliness Measby many more people who are in a posi on to ensure this that urement Tool. loneliness and social isola on is addressed in their communiPublic Health Specialty Registrars in Yorkshire & Humber es. have chosen to focus on loneliness and social isola#on as a theme for 2015. As part of this, they have formed a partner- What can individual public health registrars/consultants do? ship with the Campaign to End Loneliness to raise the profile Many individual registrars work with public health teams in of the issue in Yorkshire & Humber and beyond. What do local councils. They understand the risk factors that can lead you think are the poten#al benefits of a partnership like people to becoming lonely and the poten al health consethis? quences of loneliness. They are in a great posi on to use Loneliness is a public health issue and needs to be squarely on their knowledge of the issues to influence their own prac ce the public health agenda. The Campaign has argued that local and the prac ce of others. authori es have a key role to play in taking the lead on adIndividuals can become champions in the workplace to raise dressing this issue across their community. Our supporters awareness of this issue in their local area as well as influenc(including academics, commissioners and front line services) ing back upwards to na onal public health bodies to encourhave a wealth of knowledge and exper se on this issue and age them to give this issue greater priority. together we have produced a range of materials, tools and
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FRONTLINE PERSPECTIVES ON LONELINESS Andy. Clinical Assistant in A&E and ST2 in Public Health In your experience, how does loneliness and social isola#on impact on your pa#ents? Loneliness decreases anybody's resilience when dealing with any health or social challenge. Something that we might consider to be a small health problem can become a major hurdle without that natural support, and something quite serious can quickly become overwhelming without someone to turn to. In the A&E se(ng it's especially difficult as the turnaround of pa ents is so quick that we don't feel we have the me (or exper se) to help with this element of a health or social problem. But it's not just A&E that feels under pressure from lack of me and resources, and so nowhere are these people ge(ng properly helped - we all should be helping ... including in A&E. What are the common reasons that lead to your pa#ents experiencing loneliness or social isola#on? The most common are perhaps the ones we would intui vely iden fy - 1. old age with loss of a spouse and other family members, 2. mental health problems that make social interac on difficult. But there are many others, lots of life circumstances can result in undue isola on - moving to a new town or country where we don't have social connec ons, chronic illness that might make it hard for us to interact in 'normal' ac vi es, young people bereaved of friends or family, unrecognised mental health/ behavioural health/social health problems that can quickly turn someone into an apparent 'outsider'. I think we are very quick in society to decide someone doesn't 'fit' and use that as an excuse not to make an effort to interact .
More and more people are facing loneliness & social isola#on. How does this match with your experience? It's difficult to say without knowing this area in more detail - is it really true, or are we just be4er at iden fying this and the related mental health problems? I think it could be - we know that people are living longer which means there's more me to be lonely, we know that we are in a funny transi on where social media is everywhere but not everyone quite knows how to use it to their benefit. I do think, we need to improve how our society, social and health care systems respond to loneliness as a problem that can be fixed. Please describe which of your pa#ent groups are most affected by this issue Asylum seekers and certain groups from overseas (although some groups from overseas are actually much be4er at more tradi onal community support than our mainstream English society), the elderly (a major problem and an injus ce we need to address) and those with mental health problems and substance misuse issues (especially young adults). What support, if any, are you able to offer or signpost people to? It is ge(ng slowly be4er, but we need more. There are community support teams who will visit older people in their home within a day or two of discharge from A&E. There are also be4er responses to people who present with mental health problems - A&E used to just assess degree of self harm, do an emergency 'suicidal risk' assessment and if neither warranted admission, we would discharge people back to the situa on they were in before. These aren't easy situa ons to fix, but A&E is such a good 'pick up' place for people in difficulty that we should use it for community referral ... let's keep building this capacity! In your view, what more needs to happen to reduce the burden of loneliness/social isola#on for your pa#ents? We need to use the fact that lots of lonely people come through the acute health care system to iden fy them. We should send them home in the knowledge they will receive input and support in the community. We are far too o8en discharging people back to the lonely places from whence they came - at worst this means missing the only opportunity the system gets to improve the person's situa on.
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FRONTLINE PERSPECTIVES ON LONELINESS CONT’D…... Andy. TB Specialist Nurse, Sheffield In your experience, how does loneliness and social isola#on impact on your pa#ents? It mainly affects mental health. In isola on people generally have fewer opportuni es and I believe isola on shortens life expectancy. What are the common reasons that lead to your pa#ents experiencing loneliness or socially isola#on? Old age and bereavement. Separa on and divorce. In my client group (mainly new arrivals in the UK) separa on from family and friend support is a very big factor. It is quite common for people to have lost contact with partners and children and not know their whereabouts or to find it very difficult to get visas for rela ves to visit them in the UK even when they are able to support them financially. People housed under the Na onal Asylum Support Service (NASS) can be housed anywhere in Sheffield . They can be miles away from people who speak the same language and o8en cannot afford bus fare. I have met a lot of very unhappy people who have come to the UK for an arranged marriage and find living with the in-laws very isola ng, although that is not always the case of course. Lack of cash can be very socially isola ng especially if someone’s accommoda on is unsuitable to ask others to visit them.
“I le6 my country of origin and with that departure, an extended family, a career and large group of good friends. I was le6 alone and powerless in the UK…” Riana (Migrant) More and more people are facing loneliness & social isola#on. How does this match with your experience? I suspect this is true but I have no real evidence. Casual work with flexible hours, and agency working must mean that fewer people get support from a work environment. Alcohol is not the answer but pubs closing must lead to more social isola on because it is a loss of public space. Cuts to public spending will inevitably lead to more isola on, cuts to parks, youth services, the me carers can spend with a client…..etc Please describe which of your pa#ent groups are most affected by this issue It can be anyone, but in my client group it is most obviously asylum seekers.
What support, if any, are you able to offer or signpost people to? Focussed a4en on for the dura on of TB treatment. [Typically 6 months] and referral to community groups/organisa ons.
In your view, what more needs to happen to reduce the burden of loneliness/social isola#on for your pa#ents? On a macro level this is about taxa on and the sort of society and provision that we want and are willing to pay for. On a local level it can be hard to keep up with what is currently available because groups and funding come and go. I think a central register of what is available would be helpful. English for Speakers of Other Languages (ESOL) provision is o8en quite poor and I would like to see more money invested in this as it decreases social isola on, gets people mixing on a non-ethnic basis and saves money in the long run.
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James. GP and Phase 3 Registrar In your experience, how does loneliness and social isola#on impact on your pa#ents? From a primary care perspec ve, loneliness and social isola on impact in different ways in different pa ent groups. The main manifesta on is probably a form of low level mental illhealth inasmuch as pa ents will o8en experience some of the symptoms and exhibit some of the signs of depressive illness, but not necessarily at a level that would fit with a formal diagnosis. In addi on, some less mobile pa ents will o8en “not want to bother the doctor” and because they may not have regular contact with family or friends appear to present for advice or assistance much later than their peers who have a more resilient social network. This is par cularly no ceable in those who have moved regionally to re re in the area, and they are therefore geographically isolated from their families and previous support networks. What are the common reasons that lead to your pa#ents experiencing loneliness or socially isola#on? In terms of older adults, the main issues that appear to lead to our pa ents experiencing loneliness or social isola on are o8en around independence and mobility, either of themselves or of those in their social network who acted as the individual who maintained the network. Unusually some of our younger pa ents are also describing feeling lonely or socially isolated, in spite of having a reasonable social network. Anecdotally these networks seem to be virtual using social media rather than a more tradi onal face-to-face rela onship. It raises the ques on of whether pa ents get the same benefit from social media as they do from a face-to-face rela onship. More and more people are facing loneliness & social isola#on. How does this match with your experience? This fits with what I am seeing in clinical prac ce, although very few pa ents will iden fy that they are experiencing loneliness and social isola on. I personally feel as though I am dealing with more “social” rather than “medical” problems. I have also spoken to GPs in my role as a Public Health registrar who describe “spending more me feeling like a social worker rather than a GP”. Please describe which of your pa#ent groups are most affected by this issue The pa ent groups have in the past been older adults, especially those who are geographically isolated from their families and/or with issues that impact on their mobility or independence. However more recently there appears to be a cohort of younger adults/adolescents who are repor ng similar issues but due to relying on virtual networks rather than more tradi onal face-to-face networks. What support, if any, are you able to offer or signpost people to? In terms of older adults I o8en signpost to an exis ng day centre on the estate, however, this is a private organisa on and there is a cost associated for those who are ineligible for social services support. In your view, what more needs to happen to reduce the burden of loneliness/social isola#on for your pa#ents? I am not sure that there is one thing that needs to change. The causes are complex and are o8en variable and dependent on the individual, therefore a popula on approach may not actually solve the problem. Ensuring that services that mi gate social isola on (e.g. bus routes) are not cut will allow some to maintain their independence, but I am not sure that there is a simple answer that will solve the problem. I guess that if there was, we wouldn’t be having this conversa on.
“My husband died and le6 me on my own. I managed to cope with things and get by at first. But in the last two years it got very lonely and miserable. I saw my daughter once a week, but the rest of the me I was on my own with nobody to talk to. I thought, ‘This can’t go on with me by myself’.” by Joy, 88 11
SOCIAL ISOLATION AND CHRONIC ILLNESS By Sophie Egerton. Phase 3 Public Health Registrar. sophiele@doctors.org.uk Sophie is a public health registrar, previously a GP, who was diagnosed with a rare gene c condi on 18 months ago. The condi on is Vascular Ehlers Danlos Syndrome, a rare variant of a connec ve ssue disorder which results in weakened collagen, par cularly affec ng the walls of medium-sized arteries and hollow organs like the gut.
First and foremost, we need to be sure of what we are talking about, when it comes to ‘chronic’ illness. Our wholesale adopon of the word ‘chronic’ probably fails to convey what we intend to define – which is the state of experiencing the symptoms of a disease which is long term; not necessarily constant, possibly unpredictable and poten ally resul ng in significant disability. Official defini ons of chronic illness may fail to convey the extent of disability and disrup on which can accompany chronic illness. In reducing a set of condi ons (the manifold and diverse effects of all chronic illnesses) to a single, rather trite word, we run the risk of restric ng how society might respond to what is a huge popula on of pa ents with myriad needs. We might unwiLngly harbour assump ons about disability and long term suffering which are more convenient than accurate, for example that the effects of long term illness are constant, predictable or likely to follow a linear trajectory. In reality, chronic illness tends to produce a state of fluctua ons in illness and wellness, which are difficult to predict, plan for and resolve. We have a good working defini on of social isola on: “…an objec ve lack of interac ons with others or the wider community.” In considera on of how social isola on might arise as a result of, or adversely impact the effects of chronic illness, it is appropriate to invoke the work of Bury and his concept of ‘biographical disrup on’. In his seminal paper, Chronic illness as biographical disrup on1, which recounted his interviews with pa ents recently diagnosed with rheumatoid arthri s, Bury suggested that the process of becoming unwell and receiving a chronic illness diagnosis represented a crisis in the life of an individual, which would then have implica ons for their role in society, their percep ons of ‘self’ and, in turn, their rela onships with others. Focusing on the imposed need for extra resources, in terms of help from others, we run into the problem of ‘feeling like a burden’, which speaks to the human aspira on to pledge reciprocity – the idea that one good deed deserves or even requires another, in return2. Our previously ‘healthy’ person may start to worry that they cannot fulfil the social norm of reciprocity, because they are unwell (rela vely resource-poor) and find themselves trying to ‘calculate’ how much help it’s acceptable to ask for, given that they cannot guarantee a return. This might become a barrier to seeking help or may lead to behaviours based on ‘reciprocal concessions’3 – whereby an ini al request for help might be a&enuated (to something which appears less burdensome). The downgraded request, in turn, is viewed as a form of concession from the help-seeker; in turn evoking sympathy in the chosen helper and resultant mo va on to provide some support. The problem with the reciprocal concessions approach is that a pa ent may find themselves diminishing their help-seeking so much that they start to miss out on healthimproving interven ons (which depend on physically geLng to clinic). They may also unwiLngly withdraw from interac ons with their social network in order to avoid any situa on which might lead to help-seeking or even trigger unsolicited offers of help - this might be one reason for increasing social isola on. In the event of social isola on having been a factor prior to diagnosis, the repercussions for access to help and support may be felt much more acutely, leading to disadvantage much earlier in the illness. We know that the lack of a decent support network has been shown to adversely impact health outcomes and wellbeing. Another poten al reason for increasing social isola on is that what was once taken for granted, a healthily func oning body, might suddenly feel much less reliable and likely to become an embarrassment socially, in turn eroding self-confidence and leading to avoidant behaviour.
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Maslow’s Hierarchy of Needs4 is also a personal favourite, because, whilst we can argue for and against various details of the theory, I know that my own health crisis seismically undermined my usual state. So, for example, star ng from the premise that, despite being varyingly unwell for twenty years, I had managed to make it all the way into the self-actualisa on zone (working, producing, being at liberty to use my brain for the greater good) and stay there most of the me, I suddenly got very sick and tumbled, eventually, right back to base camp. This withdrawal from anything more than the ac vi es of basic survival compounds social isola on and also makes a&endances for clinic appointments much more of a challenge, thereby reducing access to therapeu c interven on.
Key Points •Chronic illness is not linear
•Unreliable bodies cause embarrassment
•Diagnosis has a social impact
•Tumbling down Maslow’s hierarchy
•Limited reciprocity leads to withdrawal
•Diagnosis may cause a grief-type reac
on
Finally, the work of Elizabeth Kubler Ross has much to contribute to our understanding of the chronic disease experience, if we assume that receiving a diagnosis represents the sort of crisis event which could result in a grief-type reac on. The Kubler Ross curve, which has its supporters and detractors, plots human produc vity at various stages of an agreed grief cycle5. If we can view that cycle flexibly, as something which individuals probably travel through in a less-prescribed way than the model curve might suggest, then we might adapt it to chronic illness. If chronic illness disrupts life, any response to it must involve a degree of adapta on and change and the acceptance of a ‘new normal’. However, given that future prognosis, risks and therapeu c op ons may remain uncertain and advice from healthcare professionals may be conflic ng, pa ents are unlikely to go through the stages of grief neatly, poten ally geLng stuck in a protracted unproduc ve state (which could mean rock bo&om in Maslovian terms). It might appear to observers that the individual treads a very erra c path through life for some me - at odds with societal sick role expecta ons and rather difficult for others to comprehend and to respond to. A change in produc vity, which affects an individuals’ contribu on to society, resul ng from illness or grieving can become the crisis in itself, because it can give rise to feelings of guilt especially during periods of paid sickness absence. Naturally this may nega vely impact ideas of self-worth. The person who is deemed too unwell to fulfil their work role may withdraw from social situa ons out of a sense of disen tlement to certain ‘goods’, but this can only increase their social isola on – where interacon might be a powerful rehabilita ve force. Many chronic illness pa ents will have already had years of subop mal health before geLng a diagnosis and may have encountered difficul es ‘being believed’; regarding symptoms which may have appeared commonplace or vague or difficult to measure objec vely (take fa gue as an example). When does fa gue become disabling and therefore valid in terms of concessions to reduced produc vity levels? Pa ents may well have suffered s gma (socially isola ng) due to others failing to understand how severely they are affected – aHer all, isn’t everyone red? On the other hand, this may ul mately mean that diagnosis at least offers something posi ve, by way of vindica on.
References 1 Bury, M: Chronic illness as biographical disrup on Sociology of Health and Illness Vol. 4 No. 2 July 1982 2 h&p://www.jstor.org/discover/10.2307/2092623?uid=3738032&uid=2&uid=4&sid=21106286601631 3 Cialdini, R.B., Vincent, J.E., Lewis, S.K., Catalan,J., Wheeler, D.,& Darby, B.L., Reciprocal Concessions Procedure for Inducing Compliance: The door-in the face Technique. JPSP, 1975,31,206-215. 4 Maslow, A. H. A theory of human mo va on. Psychological Review, Vol 50(4), Jul 1943, 370-396.
5 Kubler-Ross, E. (1969), On Death and Dying, Touchstone, New York, NY.
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Case Study: Health Trainers Address Loneliness Lucy is an 83 year old re red care-worker who cared for her husband un l he died two years ago. She was ini ally referred to the Health Trainer service in North Sheffield (provided by SOAR) for weight management advice by her cardiac community nurse. Lucy had a mobility scooter which she managed to get out on occasionally and son who called in with shopping on a regular basis, but generally her mood was low. The loss of her husband and caring role in life, coupled with living alone in a rela vely isolated area of North Sheffield appeared to be the main reasons for Lucy’s low mood. Lucy also had a history of heart disease and had had a pacemaker fi&ed. Following discussions around healthier ea ng and taking more exercise, Lucy agreed some goals with her Health Trainer. She was referred to an aqua-aerobics class with the support of her GP. During subsequent visits, the Health Trainer signposted Lucy to a local luncheon club and the Door2Door service to facilitate trips to the local supermarket. Aqua-aerobics was a huge success, both from physical ac vity and self-esteem perspec ve. The aqua-aerobics instructor said that Lucy is “the life and soul of the classes and her determined a@tude puts many of the younger ones to shame!” Lucy succeeded in losing some weight, which helped to ease her joint pain and built up her self-confidence. She mixed more within her community and began mee ng others in a similar situa on.
“I can’t put into words how much I appreciate your hard work and what you have achieved for me.” Lucy The Health Trainer signposted Lucy to a local“Turn Your Frown Upside Down” healthy lifestyles lcourse. As a result, Lucy met three other Health Trainer clients from her area. They have now all become friends and Lucy organises day trips and holidays for them all! Lucy is now able to fulfil her need to socialise with like-minded people and it has given her back her caring role in life. She is looking forward to the future in a much more posi ve way. Outcomes
•Improved social contact •Improved confidence and self-esteem •Improved diet, mobility and physical ac vity levels •Mental Health well-being improved 100% (WHO5 scale) •Diabetes, Blood Pressure and Cardiac Health indicators all improved •Signed off by Cardiac Health Nurse Service •The forma on of an informal women’s social group in the local area, with Lucy at the helm. •All four women now have reduced their social isola on, improved lifestyles, have achieved weight loss and improved their mental and physical wellbeing indicators
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LONELINESS AND ISOLATION - AN ACADEMIC PERSPECTIVE By Ian Walker. Phase 2 Public Health It is probably not surprising to find that the field of loneliness and social isola on research is embryonic. Much of the available research in this area has only been undertaken in the last five years. However there is an emerging evidence base indica ng a link between health outcomes (physical and mental) and being socially isolated, par cularly in old age. In this sec on of PH1 we highlight where the gaps in the research exist. For registrars interested in pursuing research opportuni es, this may provide food for thought. A scoping review undertaken by researchers at the Personal Social Services Research Unit (funded by the NIHR School of Social Care Research) found that prescribing best prac ce in this area is difficult because of the immature evidence base. Challenges exist due to significant gaps in the evidence and difficul es in linking the literature on risk factors to their impact on health and wellbeing. The significant gaps the researchers iden fy are:
•A widely regarded conceptual model that explains the mechanisms and processes from social isola on to detrimental health outcomes has not yet been developed.
•A lack of robust research focusing on the use of health and social care services by those that are lonely and/or socially isolated
•A lack of robust and repeated evidence on interven ons to reduce loneliness and isola on •Only a third of studies the researchers iden fied used a longitudinal design which can iden fy the direc on of causality between health outcomes and isola on
•Almost all research used the individual as the unit of analysis, whereas incorpora ng ecological factors could iden fy the role of communi es and neighbourhoods in this rela onship
•Li&le research has looked at the health effects of reducing loneliness to see if improvements are possible through such interven ons
“Isola#on is being by yourself. Loneliness is not liking it.” Voluntary sector service provider (Independent Age Isola#on Report) Further to this scoping review, the Campaign to End Loneliness commissioned a review of evidence which was undertaken by Oxfordshire Age UK. This review highlights many of those in the NIHR review but also iden fies the following gaps -
•Robust evalua ons of one-to-one befriending services and telecare/telehealth interven ons to reduce loneliness •Evidence of cost-effec veness of interven ons to reduce loneliness •The impact of loneliness in ins tu ons and with individuals who have sight loss, hearing loss or cogni ve impairment It is clear this area of research has many opportuni es for registrars interested in developing a research career or for those who are interested in applying academic research techniques in public health prac ce. A range of research gaps exist in this field; from robust evalua on of exis ng services to theore cal conceptual models of isola on (cause) to health outcome (effect). References Courtin, E. and Knapp, M. (2014) Health and Wellbeing Consequences of Social Isolation and Loneliness in Old Age. NIHR School for Social Care Research. Available at http://www.sscr.nihr.ac.uk/ dev/project/health-and-wellbeing-consequences-of-social-isolation-in-old-age-a-scoping-study/ Bolton, M. (2012) Loneliness – the state we’re in: A report of evidence compiled for the Campaign to End Loneliness. Abingdon: Oxfordshire Age UK. Available at http://www.campaigntoendloneliness.org/resources/
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CHRONIC ILLNESS AND SOCIAL ISOLATION: BEYOND THEORY In this second part of her reflec ons on chronic illness and social isola on, Public Health Registrar and GP Sophie Egerton takes a personal look at her own experiences. From challenges of the health system, a@tudes of fellow medical professionals and her own insecuri es, to the comfort and strength found in friends and loved ones; Sophie provides an insighFul perspec ve on the highs and lows of living with a chronic condi on. “The last two years have been very challenging in many ways and my eyes have been opened to the daily and longer term struggles of people with chronic illness. No one person’s experience will be the same, but I have been surprised by many things: I had taken for granted that there would be more understanding, from medical professionals (colleagues!) about the human consequences of illness e.g. how living with a real risk of catastrophe impacts on being a single mum. When people fail to ask about life beyond the clinic or simply cannot empathise or understand their pa ent’s concerns, this in itself can feel very isola ng, because it seems impossible to access any shared experience or sensible advice. However, the internet can go some way to allevia ng social isola on in this respect, par cularly in the case of rare disease, sufferers social networking bridges the geographical gaps between pa ents and also brings expert advice within reach. Having an ‘invisible’ illness (the onset of disability does not necessarily come with its own wheelchair) can be a source of inverted s gma – what I mean by this is that many people s ll encounter suspicion and cynicism when their limita ons are not visually obvious. There will always be unhelpful comparisons e.g. with the person in the wheelchair who manages amazingly well, in which case the person who looks ok but feels incredibly unwell ends up feeling inadequate, guilty, a fraud. There are some systems and bureaucra c processes which are just too rigid to accommodate the needs of the individual humanely and this can lead to feelings of disenfranchisement. Chronic illness is not uniform and should never be reified thus. It represents a massive, heterogeneous mel ng pot of condi ons, symptoms, disabili es and human consequences (at the individual and societal level).
“I know now that I haven’t been a lazy lightweight all my adult life – this maHers a lot more than it should to me” I oHen used to reflect on the Census ques on about feelings of wellness and wonder if everyone felt as ‘off it’ as I did (meaning that I was just a wimp for feeling so overwhelmed) or whether I was, in some way, put together a bit differently. I’ve resolved that one now. In a sense, this could be an isola ng thing, but on the other hand, I have a sense of valida on now and solidarity with other ‘not-100%-well’ people. I know now (‘it’s official’) that I haven’t been a lazy lightweight all my adult life – this ma&ers a lot more than it should to me (I think it’s more about my own perceived s gma around fa gue, which is, perhaps, culturally biased); but at least I am figh ng with that no on less now and can be a bit kinder to myself. The concepts of biographical disrup on and pre&y much the en re contents of Bury’s paper resonate strongly with me and this is a huge comfort because I can recognise my own struggles in others. I feel unwell quite oHen, but s ll look pre&y normal (certainly not ghastly enough to be feeling so wrecked) and this makes me feel like a fraud. The ups and downs are unpredictable and disrup ve. I feel guilty if I’m not produc ve and guilty if I overdo it and then crash – i.e. fail to pace myself well. Pacing is very hard to nail.
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The advice I’ve been given makes perfect logical sense; “if you’ve got the energy to do something, then do 75% of what you think you can….to keep some [energy] in reserve”. I entreat everyone to try this, because even if we could objec vely measure the energy expenditure of a given ac vity, it defies human nature and the laws of momentum to call it a day prematurely when we are feeling ok and enjoying a sense of achievement. Anyway, how on earth does one ¾ empty the bins? Social pacing means knowing when to hibernate, but withdrawal from contacts carries a risk of eventually being leH out of the loop, so this is another aspect which must be managed with some discipline. This can be difficult for people who tend to prefer spontaneity. What started as an acute health crisis eventually resolved into a chronic illness state, compounded by a great degree of uncertainty. A con nued lack of any therapeu c consensus and on some points, complete polarisa on of expert opinion re: safe management, have done nothing to facilitate the prescribed Kubler Ross process! Having said that, I’m slowly learning to accept my new normal (which is, ironically, anything but ‘normal’ as it fluctuates unpredictably) – perhaps be&er to call it a new reality. It’s a mindfulness trick really. As for pacing, in reality it just boils down to a very challenging process of trial and error. The idea is simple – to try to fla&en out the energy ups and downs and adapt to living somewhere in the middle so that I can achieve a more predictable, sustainable level of func oning (produc vity) and feel more ‘useful’. This is where social isola on can be a useful technique, if only as a thought experiment. I actually need to acknowledge my differentness and disengage with my default ideology – which has always inclined me to calibrate my ‘normal’ according to professional norms and the behaviours of colleagues and peers - people who are hopefully ‘well’. So I must consciously deviate from what I have tended to measure myself against and derive a new model of what ‘ought to be’ normal for me. The word ‘ought’ is, of course, loaded with judgement and designed to make us feel obligated – so it’s also about challenging one’s inner discourse, trea ng the ‘self’ more benignly and making peace with inevitable change.
A6er two near misses, with bilateral spontaneous caro d artery ruptures, Sophie is living with the long term effects of a disorder affec ng all body systems, including the autonomic nervous system, the a6er effects of mild trauma c brain injury and the con nued, unpredictable risk of a catastrophic event. The less drama c symptoms have been there since early adulthood and although they have worsened, there has been some comfort in being able, finally, to ra onalise them. sophiele@doctors.org.uk I wish I could say that I’d finally tapped into some hitherto-concealed reserve of inner strength or sheer marvelousness but, notwithstanding the stuff about reciprocity, for me it really has been about people. A cherished friend told me about intui ve empaths recently. Being one myself, I’m fortunate to have a few of them around me in my life and they seem to have apparently inexhaus ble reserves of compassion. But I suppose that emo onal support is the thing I’m most likely able to reciprocate. Being a mum has kept me from dipping below Maslow’s base camp and I think I’ve earned my Kubler Ross stripes aHer a fair few loop-backs. So what has been the constant lifeline for me is the polar opposite of social isola on. Love, kindness, friendship, and empathy have been key rehabilitators for me. (This goes very much for clinical interac ons too – the smallest act of compassion can offset a whole lot of badness). When a person who loves you has the willingness to gently mo vate and empower, it becomes much harder to fail. These ‘goods’ of love and solidarity are located mid-hierarchy if we take Maslow literally (which is probably not as intended), but if we can learn to accept help with the caveat of less than perfect reciprocity, these precious resources are most certainly available at base camp too. That’s if we have the luxury of friends and loved ones. Many people suffer from appalling social isola on and are not as fortunate as I have been. I saw it when I was a GP and hospital doctor and even during my s nt as a telemedic. The number of mes I thought to myself, “If I could just get this person a network” was too many to count. This is not a problem which is easy to ‘fix’- the government can’t force it and social care is stretched beyond belief. But if every single one of us realised that we can make a difference, however small, in somebody else’s life, it would be a start. Think about it.”
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THE SILVER LINE It’s true to say that if you make something simple enough for everyone to use, then they will. Esther Rantzen’s vision to create a “ChildLine for older people” is a simple concept – the first, free 24 hour helpline, available every day and night of the year, where you can ask about services in your area, talk in confidence, get some friendly advice or quite simply have a chat. And for people who would appreciate a regular call from the same person every week there are now more than 1500 volunteer Silver Line Friends who share the belief that a simple connec on with another human being can be life-changing. As one caller told his Silver Line friend “when I get off the phone, I feel like I belong to the human race”.
“The hardest thing is ea ng alone and the flat, dead nights … there is nothing worse than trying to eat a meal on your own in my opinion. It seems to bring it home to you.” Dorothy, 85 How it all started Dame Esther Rantzen wrote an ar cle for a na onal newspaper about the loneliness she experienced having being widowed and living alone for the first me in her life, at the age of 72. She received a huge number of le&ers from people who shared similar intense feelings of isola on but were reluctant to talk about it to family or friends because of the s gma associated with admiLng to being lonely. Having established ChildLine in 1986, Esther recognised the transformave effect a telephone call can make to people who feel vulnerable and depressed. She researched what was available for older people and found there was a gap – no helpline offering informa on, friendship and advice which was available at any me of the day or night when older people might need to use it.
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What sort of calls does The Silver Line receive? Our specially trained helpline staff offer informa on, friendship and advice, and link callers to local groups and services. As well as offering regular befriending calls, we work in partnership with Ac on on Elder Abuse and the CQC to protect and support those who are suffering abuse and neglect. The main reasons for calls are…
•Loneliness 37% •Health 16% •Lifestyle / Social 19% •General Info 7% •Abuse 5% (current 3% - historic 2%) •Advice 5% •Volunteering 1% •Other (various) 10%
Silverline sta#s#cs... Daily call volumes are averaging 1000 a day There are 1200 older people receiving regular weekly calls from their volunteer Silver Line Friends, plus 1100 keeping in touch calls taking place each week 40% of our callers are male and the remaining 60 % are female There are 1500 volunteer ‘Silver Line Friends’ trained 34% callers are aged between 60-69, 23% between 70-79, 18% between 80-89, 5% are over 90 but this age group are twice as likely to call than any other group as a % of the 90+ UK popula on 67% of callers contact the helpline because they are lonely or isolated, 88% live alone and 54% say they have no one else at all to speak to, 68% of calls are aHer 6pm or at
Esther Rantzen says:
“When you walk into our helpline base you hear the sound of laughter. There’s no ‘call-handling me’ we love the conversa ons and the memories we share. For the majority of our callers have nobody to talk to, at all, apart from us. I spoke to Bill on Christmas Day. He told me: “This is the first Christmas Day for years when I have spoken to anyone. It can be a week I go without talking to anyone. It can be several weeks that I go without having a proper conversa on.” So what have we learned over the past year? Firstly, how profound the need is, and how crucially important it is to break through the prison of silence that loneliness creates. Secondly, how proud the older genera on are, and how determined ‘not to become burden’, as our callers tell us.
“when I get off the phone, I feel like I belong to the human race” What challenges does a service such as The Silver Line face?
What can the health professionals and policy makers do to help?
The Silver Line has been opera ng as a na onal service for 18 months and has received more than 400,000 calls. So the simple idea is having a transforma onal effect on the lives of thousands of older people and a huge, previously unmet need has been revealed. There is no other helpline, available 24/7, free and confiden al, and offering informa on, friendship and advice, linking older people to local groups and services, and suppor ng those who are suffering abuse and neglect. But funding is our greatest challenge as more people use The Silver Line, our costs increase. From recrui ng, training and suppor ng volunteers who befriend older people and make weekly friendship calls, to staffing the helpline 24/7, 365 days a year is a hugely expensive opera on. Recording our calls for safeguarding through a virtual call centre means that the charity pays for all the calls made by our volunteer Silver Line Friends to older people, and older people who call the helpline use our call-free number. So apart from answering every call with a quality response, and ensuring every older person who requests a Silver Line Friend is matched to a trained volunteer, making sure we are sustainable as we approach our second birthday and into the future, is a key challenge for the organisa on.
Health professionals play a cri cal role. OHen they have awareness of and access to people who are among the most vulnerable and isolated. As a free 24/7 helpline we are appealing to many people and our focus needs to remain on reaching hard-to-reach groups who may not necessarily know about us. Health professionals are usually perceived by an older person as trusted source of knowledge and referrals from a trusted source are known to be more effec ve than blanket media coverage. Health professionals are able to iden fy people who perhaps currently use services inappropriately (i.e mul ple GP appointments due to loneliness) or equally they may iden fy people who are not accessing services when they should be. There is a real opportunity for partnership opportuni es with GPs, CCGs and Health and Wellbeing boards – we can provide dedicated support to older people with tangible and measurable outcomes. We can provide support to the most lonely and isolated pa ents and reduce the burden on the health service. We have rich data on our callers and are in a posi on to be able to publish our findings through independent evalua on which can influence policy and shape services and decisions rela ng to older people in future. Policy makers need to ensure that they engage with us proac vely and we are keen to develop these rela onships at all levels.
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SO, LONELINESS IS A PUBLIC HEALTH ISSUE? … WHATEVER! By Ian Walker. Phase 2 Public Health Registrar So if you have got this far in our issue of PH1 (well done!) you are either a) an insomniac for which this edi on has surprisingly not cured you; b) interested in this topic and have some mo va on to explore this issue c) a du ful person who will read anything you are told to (!) or e) a scep c that does not believe this has much to do with public health. Whichever category you fall into (or another not listed) we have tried to encourage you to see that loneliness and social isola on are indeed public health issues and that 21st century public health specialists should be engaged. However, if like me, you have lingering ques ons and issues with this whole issue then my random thoughts below may scratch where you are itching…
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Now we have a ubiquitous label ‘loneliness’ which covers a mul tude of social and inter-personal ills, are we not in danger of medicalising this social issue as we have done for child birth and bereavement. For all we know there could be a drug company, at this very moment, rebranding an anxioly c as a cure for loneliness!
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As we have explained in this issue of PH1, it is hard enough defining loneliness, let alone quan fying it. Admi&edly researchers have done an admirable job at this but can robust science really equate the effects of an existen al feeling of isola on with the profound health risks of smoking cigare&es.
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Does no-one else see the poten ally posi ve aspects of loneliness on our health? Infec ous disease risk is greatly lowered for a start, as would be stress-related poor health from inter-personal conflict.
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If over 90% of people are not lonely, surely this is a good news story. Despite the increasingly individualis c culture, mobility through work and careers, transforma on of models of family life and the (evil?) internet, we are not geLng propor onately more lonely. Older people today report the same propor on of loneliness in the UK that they have since the 1940’s. Despite the challenges to social cohesion, modern Britain may be riding the storm.
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If loneliness is more predominant in older age groups, does this not reflect the existen al/spiritual distress of being nearer death. The foreboding approach of the end of our lives is likely to lead to symptoms of detachment and separaon from others that may be manifest in the survey results regarding loneliness. Is the real issue perhaps a spiritual one, as we consider shuffling off this mortal coil?
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There is large varia on interna onally in reported levels of loneliness. As reported by Walker and Maltby (1997) the prevalence of loneliness amongst older people in Europe ranges from: under 5% in Denmark around 5% to 9% in Britain, the Netherlands and Germany to over 20% in Portugal and 35% in Greece
Now this could represent an issue of interpreta on and language, but it must be worthwhile considering what factors may influence these differences before coming to any firm conclusions in the UK.
As with most issues we wrestle with as public health specialists, the ques ons and answers to loneliness are not simple. We should not pretend that they are. In order to address the issue maturely, we must accept the doubts and concerns that are obvious to many of our non-specialist colleagues who will need persuading as we seek to exert influence in this policy area.
Reference. Walker, A. and Maltby, T. (1997) Ageing Europe. Buckingham: Open University Press.
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SO WHAT CAN WE DO AS PUBLIC HEALTH SPECIALIST REGISTRARS? Here are a few sugges#ons……. CHECK THE FACTS: Familiarise ourselves with the evidence. That which we have referenced in this edi#on of PH1 and from the many other sources we come across. As public health experts we need to cast a cri#cal eye and be convinced of the evidence behind the headlines to sa#sfy ourselves that it all stacks up.
LOCAL MAPPING: Find out what is going on in your area on this issue. Ask around your departments, check your local JSNA and discuss it with your supervisor and DPH. The Campaign To End Loneliness is keen to hear about what is happening in Local Authori#es around the country and par#cularly about new ini#a#ves and projects.
ADVOCATE: If you are convinced about the relevance and importance of this issue in your local area, you can champion the cause. You will find a lot of resources and support on the CTEL website . www.campaigntoendloneliness.org
RESEARCH: If this issue has really grabbed you, why not get involved in researching this topic and adding to the embryonic evidence base. This is a quickly growing and poli#cally resonant area of research which is a>rac#ng funding, par#cularly in rela#on to health.
VOLUNTEER: You could do something personally to address loneliness e.g. Make contact with a neighbour who may be lonely. Be aware, no#ce friends/acquaintances/ work colleagues who may seem on the fringes. Volunteer at a local befriending/visi#ng service.
We hope you have enjoyed reading this edi#on of PH1... The Yorkshire and Humber Registrar Editorial Team
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